In the past seven years, I’ve had a lot of medical experiences. But every now and then, a certain conversation or episode of care becomes more memorable than others. Whether the heart surgery that saved my life, or a mundane a primary care visit with my first mammogram after having a pacemaker implanted, it’s the unusually good or bad care experiences that really stand out.
I was spending some time organizing my medical records this week. And by that, I meant putting them all away, because I am so ready to be D-O-N-E with all of it! I remember feeling so conflicted the morning of my final heart surgery, because while it was the surgery I needed to stay on this Earth, I wanted to run out of there as fast as I could before someone cut into my body one more time. One human can only handle so much, physically, mentally, and emotionally, before you just don’t want to go through it anymore, no matter the positive result.
But I digress. I was dutifully sorting medical records by date, entity, and body part, so in the event I should need to pull a quick test for some unexpected doctor's visit in the next 20 years, I would have it at my finger-tips instead of taking an entire day to find it in the random boxes of medical records in my basement or having to spend weeks of time re-requesting it. And no, I did not scan it all into my computer, because I still have some vision issues from my stroke, and scrolling through medical records on my computer gives me immediate nausea. So paper sorting it is. It was weird how much of my journey I had forgotten (thank God!). But oh, how quickly some of the memories returned!
I recall being re-admitted to a local hospital in Oshkosh after just having been discharged the night before at dinnertime with a new drug, Imdur, a long-acting form of nitroglycerin to help control my chest pain. I had been trying to tell the hospitalist that I was not feeling well, that I was still very light-headed and short of breath just walking to the hospital elevator. I had to sit down and rest. I couldn’t even make it to the car. I just knew this wasn’t going to end well. But after having been rejected for an immediate transfer to Mayo so they could actually run the tests I needed for constrictive pericarditis, and no one at St Luke’s in Milwaukee would take my case either, I had nowhere else to go. They had given me a single, lowest available dose of Imdur and fifteen minutes later sent me packing.
It was a rather eventful night from there. I remember my husband helping me into the house, because I was feeling oddly weak. I sat in my recliner, then reclined as my body became too fatigued. Then I had to go to the bathroom, but had difficulty walking, as I was getting weaker and weaker. Not at all wanting to go back to the hospital, I called and asked to speak to the hospitalist to see if there was something I could do to counter-act the effects of the drug. I was instructed to drink a lot of fluid to try to bring my blood pressure up. I was pretty sure my systolic blood pressure was 100, which is quite low; but then my kids popped my blood pressure cuff like a balloon, so I couldn’t double check. Fluids it was. I did as I was told.
It didn’t help. Too weak to stay in my recliner and now nauseous, I begged my husband to help me upstairs to bed, thinking I would be more comfortable there and I could just go to sleep and the drug would wear off by morning. But I couldn’t walk or crawl, or even help him move my body pretty much at all. He had to carry me up the stairs, as mostly dead weight. He dropped me on the floor at the top of the stairs, and I tried to army crawl on my belly slowly the rest of the way. But I couldn’t even do that. I couldn’t lift my trunk off the floor at all. And my arms were too weak to hold weight. So he dragged me to bed, and then lifted me into bed.
That seemed like a good idea, except for the nausea, diarrhea, and then the vomiting all at the same time. My husband was downstairs working in his office, I was upstairs, too weak to move. And I needed to move quickly to the bathroom, less than ten feet away. Needless to say, after an hour of struggling to get to the bathroom and back, and asking for my husband’s help over and over again, we gave up. My husband called 911, and an ambulance brought me back to the hospital late that night. It obviously was a reaction to the Imdur, but because my troponin was trending upward and still having chest pain on and off, they decided to admit me.
Around 4am, I met the very same hospitalist who had discharged me. She was more than a little perturbed at this point that I had dared to come back to HER hospital. She remembered that I had called her on the phone to ask for advice so I wouldn’t end up back at the hospital, but I received no credit for that attempt to stay home as she was now in charge of admitting me. She was not exactly my first choice either, but at least she knew why I was there. But instead of asking me any actual questions she may have had about my medical and heart history, I was given a lecture and demanding questions as to why I had dared to seek out multiple providers and entities outside of their health system and (gasp!) OUT OF STATE. Now mind you, I was still very nauseous. My head was literally in a basin waiting to vomit on the edge of the bed at this point. So I couldn’t even answer her nasty accusations. Couldn’t even attempt to defend myself. I was completely powerless.
Why am I re-living this very unglamorous moment at 4am in a hospital room, you may ask? Because my medical record documented it all. This doctor had listed all of the previous places where I had traveled to get my heart arrhythmia diagnosed, my TIAs/mild strokes investigated so they wouldn’t keep happening, and it was the only way I was able to access the cutting-edge heart ablations that cured my heart arrhythmia. But never mind the obvious. She already knew all of that from my medical record and the fact that I was following with one of her system's electrophysiologists for my pacemaker. She was so kind as to describe me as having a “flat affect, irritable, and moody.” She could have just said the Pt was so nauseated she was unable to converse. That would have been an accurate representation of the situation. But she kept berating me with rhetorical questions anyway, and there I was, already miserable after pulling an all nighter of nausea, diarrhea, chest pain, and complete weakness due to the drug she had given me. This was my reward.
She didn’t stop there though. Oh no. She went to great lengths expanding on the note in my medical chart, adding that I had chronic fatigue since 2013. Really? Prove it lady. One diagnosis I did NOT have. She also said that I “Reportedly work as a physical therapist full time but chart review does show that she has had some FMLA paperwork filled out this year.” Really? Please show me where I received FMLA, and while you’re at it, fill me in as to where a self-employed physical therapist for 7 years can go to qualify for FMLA? No, I really want to know. Can you sign me up please?!
This whole situation just reminds me that the psychological trauma patients endure from the poor and biased care they receive is far more damaging than any physical trauma, and I’ve had open heart surgery! And going through the medical records, the memories come flooding back, and you relive all of it again, right there, hearing her grating voice berating me, listing every medical facility I had been forced to visit because the facility or doctor before had refused to help me. Just like this facility and doctor were doing. But there I was, helpless with my head in a basin. And the appalled nurse silently watching it all go down. Good times.
I knew what I had to do. I already had the medical record, requested shortly after it all happened, because I wanted evidence of the ridiculous treatment I had received and the test results completed during my previous hospitalization to share at future doctors' visits at the time. This week I had simply been trying to itemize this stack of records in my filing system when I came across that early morning admit. It was all there- each of the errors and fabricated lies documented by this physician in my chart. So now I had to figure out this healthcare system’s process for changing my medical record in their EMR (electronic medical record). It took 30 minutes of phone calls, and I have to admit that as of this writing, I’m still waiting for a call back. But this chick is determined and persistent, so I’ll get there, even if I have to call the CEO. Trust me, it will get changed. No matter what it takes.
Why go there? Well, for one reason, these errors in your medical record read by other providers in other health systems who have no idea that these items (along with the random drugs she added to my med list) are wrong. That, and then these errors will no doubt get copied and pasted by the next provider in their note, because who has time to bother to check whether or not they could possibly be true? Then they are in the next system's notes, and the next, and so it goes. One error in one chart perpetuates throughout our medical system like the impressive thorn families living large in my strawberry patch. Thank you EMR’s! Scary thought! This physician’s overt bias against her patient caused her to literally fabricate items in my chart that could negatively impact my future care in multiple ways (and likely already did since this was two years ago). I had to get it changed to simply try to ensure my own safety moving forward, should I ever be a patient there again (not likely after this experience). Also, if this physician got away without oversight, with no one calling her out for her inexcusable behavior and complete fabrications documented as truth, she no doubt will do it again to another patient.
But why did she do it? I ask myself this as a healthcare provider myself. Obviously she prescribed the drug, it was a clear drug reaction. A simple case. So why lash out at the patient both verbally and go to such an extent to actively make up untruths in the medical record? I am certainly not a psychologist, but I’m guessing the answer is a bit of excess narcissism. If the patient can be blamed, then the doctor never made a mistake by prescribing the wrong medicine. My chest pain was uncontrolled at home, and she didn’t seem to have any other ideas on what to medicine to discharge me on to keep me out of the hospital with recurrent chest pain. Since she didn’t have the answer, blaming the patient protected her ego- she was not the problem. It wasn’t that she gave me the wrong drug (well, I was having a drug reaction and she did prescribe it). It wasn’t that she missed the overall diagnosis (she did as did all of the cardiologists at this facility). But because she didn’t have the answer, blaming the patient was the easy cop out, sparing the hit to her ego that she didn't know the answer to the patient's problem. In the mind of a narcissist, it's not possible to be wrong. So therefore, a real problem must not exist. Gaslight the patient. Scary, lazy, and inexcusable medicine, but it happens all the time. How do I know? I can easily fill up one hand with the number of times other physicians have done the same exact thing to me at other facilities at other times- and that's just MY personal medical experiences over the past seven years.
So what can you do as the patient? If this poor treatment had continued, I could have asked for a supervisor and asked for a different hospitalist. I could have asked to be transferred to another floor or facility, or simply to be discharged home. I could complain to the patient experience team, but good luck here. Until I had the diagnosis and surgery to correct the problem two months later, there was not likely to be resolution. After all, who would they believe, their own doctor or the patient? (Hint: they will side with whoever signs their paycheck.)
I’m proud of what I did at the time. I did nothing. Shift change occurred relatively quickly after that. So I ignored the behavior, and chose instead to focus on finding the fastest way to get the testing I needed to achieve a diagnosis, so an appropriate treatment plan could be developed. I put on blinders and remained disciplined and focused on the real problem at hand (my undiagnosed constrictive pericarditis), instead of wasting valuable space in my brain for extraneous details that could be resolved at a later date. You can't fight every battle at once. So it wasn’t until yesterday, nearly two years later, that I even re-visited the scene in these records.
Now I have the energy to fulfill my responsibility. Get the medical record changed (and receive a paper copy assuring the changes have been made). Do a Healthgrades or Google review to warn other patients. Tell their patient experience team, after all, now I have the work-up and surgery and outcome to prove how wrong she was. And that’s it, other than writing this article to warn healthcare consumers about this unfortunately common behavior in medicine. I’m making whatever positive I can out of a negative experience. It’s part of processing. It’s painful, but necessary to do the work to make sense of the positive and negative events that have impacted our body, heart, and mind. And it’s doing my part, one poor experience at a time, to try to impact a physician’s approach toward her patients in the future in a positive way. It may seem like a small thing, but if it prevents one more patient from being verbally berated with their head over a bucket, it will be worth it.
Jill Murphy is a Doctor of Physical Therapy and founder of MotionWorks Physical Therapy and an advocate for patient-centered care. A Christian wife and mother of three, she survived a seven year journey through the broken American healthcare system in search for an answer to a heart arrhythmia that appeared during pregnancy. A stroke, open heart surgery for constrictive pericarditis, and several other surgeries later, Jill is telling her story of unfailing resilience in her upcoming book, Doctor Heal Thyself.
Having grown up on a dairy farm 40 minutes from Lambeau Field, Jill is an avid Green Bay Packers and Wisconsin Badgers fan, and is up for any outdoor activity with her husband Tim and three children, including walking, biking, throwing the football around, hiking in scenic locales, gardening, and coaching a middle school basketball game or two.